New guy looking for info
AnonymousMay 7, 2006 at 1:18 am
Hey all – just ran into this site while reseaching gbs. Father was diagnosed about 2 weeks ago, went on respirator yesterday and the family is a bit freaked out. Hope someone here has a suggestion of where to find out more or at the very least, how to reassure the worried.
AnonymousMay 7, 2006 at 1:53 am
The GBS Foundation has a couple of great booklets that you can order for free. Just phone or e-mail and they will send them.
I think it is important to let your father know two things. First, your father will get better. Almost everyone who has GBS does get better, although what the end of the healing process looks like is anybodies guess. Second, let your father know that he is not alone in this. We have all been where he is and know what he is feeling. We will be here to answer questions and he will be remembered in our prayers.
Nordy, GBS can be pretty scary, but there is a pretty good chance that your father could live an almost normal life after his recovery.
Make sure his caregivers are well taken care of and take care of yourself.
AnonymousMay 7, 2006 at 5:03 am
Nordy this link will give you some information [url]http://www.gbs-cidp.org/overview.html[/url]
Also if he is in pain he should get the nerve pain pills like Gabapentin/Neurontin and there are others. Also he might find that having blankets over him to be to heavy for him.
Also another link [url]http://www.gbs.org.uk/info/gbs.htm[/url]
AnonymousMay 7, 2006 at 8:37 am
I hope your fathers doctor is up to date on GBS he should be recieving IVIG or Plasmaphresis treatments as soon as possible the earlier the treatment the less residual damage afterward. I was young when I had GBS only 9 and had a complete recovery without any treatments. Ther was nothing in the sixties. Now they have some very good treatments. If you need info on doctors the Foundation can give you a referal list of excellant ones who have had experience with this frustrating disease. Good luck and Good health to your father
AnonymousMay 7, 2006 at 10:34 am
Exactly what larry said about plasmapharesis or IVIG. I had GBS in 1985/86, once on the respirator, they gave me plasmapharesis, and that is definitely when I turned the corner. IVIG was not available to me then. So many, many, many, times on the old forum, people would say GBS stands for Getting Better Slowly. No question is too silly to ask here, so if you have any questions, dont hesitate to ask, there are so many people who have gone through the same thing, and they will be only too happy to help you out.
AnonymousMay 7, 2006 at 1:12 pm
As a caregiver, you also have to take it one step at a time with your Dad.
This syndrome has a mind of it’s own and healing will only take place when the nerves start to regenerate, which could be a very long time, when they are ready. It also depends on how much nerve damage has been done to his body. It’s not like a cold or the flu that runs it’s course and you get better in a few weeks. Healing could take months or years.
I wish your Dad the Best.
AnonymousMay 8, 2006 at 10:27 am
Thanks for all the input/advice, it’s very helpful. He has undergone Plasmaphresis and is on his last round of IVIG today. From what I understand his condition is normal for GBS; he can only move his shoulders and head a little when he’s conscience. His inability to communicate seems to be frustrating him more than anything right now. Does anyone have any advice on that topic? Only thing I could figure out is to make a big word chart and post it on the hospital room wall then attach a laser pointer to his glasses. We’re going to try that out today since he’s been sedated for the last two days.
AnonymousMay 8, 2006 at 11:00 am
The GBS Foundation has word board and letter boards available. You may also want to ask the hospital’s speech therapist for word and letter boards or other ideas. The resources are there, your dad just needs a good advocate to know what to ask for.
Nordy, I really like the idea of a laser pointer. That is pretty clever of you.
AnonymousMay 8, 2006 at 11:51 am
Once the treatments have ended, there should be a week or 2 of observation, and maybe some nerve testing done in this period. One thing to understand is GBS is one hard hit on the body. So is the PP treatment. It will take some time for Dad’s body to come around, and settle the confusion internally. It may look like a relapse or setback, and he’s not responding. He’s just flat out exhausted from all that. The docs should determine the effectiveness of the treatments and if it stopped the progression, so don’t be alarmed by not seeing an immediate turn around. Also understand that anyone, for any disease or reason that’s trached and can’t talk, will experiance a frightning time mentally, and is one of the leaders in the way to depression.
As others have stated below, there are many ways to communicate. The first thing to understand in this area of disability devices is, what sounds good to a normal person, often doesn’t work for the disabled. Not that it won’t, or can’t work, but I’ll use the laser pointer as an example. Your Dad’s body will be quite exhausted for some time. What movement he has now, takes all his energy to do them. So to me, I want to find the easiest way for him phisically to do this. Then I find out what he can do. Like type. In my case, I just learned to type a month before onset, so after struggling with a normal alpha board finding letters, my wife made me a keyboard outlay, and I could hit letters on instinct along with sight, greatly reducing time of phisical exersion. Speeding up communication, which is what dad is so dearly after. How it’s done, is where people waste a lot of time, and the patient grows more frustrated by the minute, and just can’t do it for lack of phisical strength. Now everybody is upset and frustrated. I used a mouthstick. Tapped on letters as someone wrote them down, and after awhile, I could talk about 20 words a minute. Because I used a laser devise in my training, I found it impossable to use. Just wore me out too fast. It takes very fine movements to zero that dot in on a square. Something I didn’t have, and your Dad hasn’t got yet either. It was so frustrating trying to hold that darn dot still for a millisecond on a letter, that I had a harder time communicating. A very defeating system, which I didn’t need at the time. I’ve always said, every devise has a value. It’s when a device is used, that can make all the difference in if a value is realized. All you can do is try things, but always start with the easiest phisically that will get communication up and running in some form. As time and healing occurs, those things change along with them. Remember, he can’t talk and you want to do the best for him. He’ll do whatever to talk, so struggling with something, won’t be readily admitted. Take 3 or 4 different ways to try at the same time. The OT department can help you with that.
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